Uncovering Hope: The Essential Role of Care in Brain Injury Rehabilitation

Sam Gentry
June 22, 2023

Today, we are thrilled to feature an insightful piece by the innovators at neumind. Dedicated to transforming the landscape of neurorehabilitation, neumind is at the forefront of leveraging technology to bridge the gap between healthcare professionals, survivors, and their families. Their comprehensive neurorehabilitative tools empower individuals and foster collaboration, driving significant advancements in patient care and recovery. Join us as we delve into the intricacies of neurorehabilitation and explore the pivotal role that neumind's groundbreaking app plays in enhancing communication and support throughout the recovery journey. A special thank you to neumind for sharing their expertise and vision with our community.

Introduction to Neurorehabilitation: Bridging Gaps with Technology

One of the wonderful things about working with people with acquired brain injuries is the differences between the individuals you encounter. Something you often hear is: 'Every person is unique, and each injury or condition is different'. Indeed, it is so commonplace that it's easy to forget how important it really is. Despite the fact that injuries impact various areas of the brain and manifest in a diverse array of symptoms, their significance extends beyond their physical aspects. Two people with very similar injuries can have completely different experiences both in terms of their symptoms and their recovery. We must not forget that although material, neurological damage does not just affect the brain but the whole person, encompassing their physical, emotional, and psychological world.

Although we have probabilities and prognoses, we simply cannot say with any degree of certainty how one individual will measure against another. At neumind, we have worked with people who have been condemned never to walk again, only for them to bring themselves to a track and a starting gun. These seemingly unexpected outcomes are why neurorehabilitation is so crucial for recovery.

Neurorehabilitation: The NHS and the “Care Cliff”

Neurorehabilitation is a collaborative intervention from a multidisciplinary team of professionals, including neurologists, neuropsychologists, occupational therapists, speech and language therapists, and support workers. The collective goal of these specialist teams is to facilitate the reintegration of individuals into the community and enhance their independence through the implementation of different physical and cognitive strategies.

Much of early intensive neuro rehab takes place in acute care settings, where the primary objective is to facilitate the re-learning of basic yet crucial skills. These core skills play a fundamental role in fostering independence. However, the focus on core skill development during the first two to six months after the injury is not sustained once individuals transition out of the hospital. As survivors move into community settings, there is often a significant decline in the availability and intensity of rehabilitation services, a phenomenon pointedly labelled "the care cliff" by neumind. 

While acute rehabilitation places emphasis on the initial six months, there is little consideration given to the subsequent 50 years, resulting in a stark lack of ongoing support. There are two contributing factors to this phenomenon. First, the shift from interventions carried out by neuro specialists in acute care settings to those implemented in community scenarios. Second, and relatedly, the cost-contact ratio between different neuro specialists.

In the realm of acute care, interventions are largely dictated by the principles of neuroscience. This field, with its focus on the structural and functional aspects of the brain and its ties to cognitive processes, often underestimates the impact of physical trauma on psychological functions. It tends to overlook the holistic aspects of behaviour, prioritising neurological rehabilitation over the broader psychological and social dimensions that become more pronounced in community settings.

Similarly, there is a fundamental difficulty transitioning from the inpatient neuro rehabilitation unit to community. Neuro specialists not only have a high cost but also often have less direct contact time with patients than informal carers. These carers bear the brunt of providing neurorehabilitation support in the community. According to research by neumind, informal carers such as friends and family provide around nine hours per day of care support. This translates to an annual cost of approximately fifteen thousand pounds, accounting for a significant 62% of the total care costs. Indeed, even for those receiving the best-in-class specialist rehabilitation, this accounts for just eight hours per week, whereas in reality, most people receive 30 minutes.

The Birth of neumind: A Collaboration for Enhanced Neurorehabilitation

Is there an alternative? Is there a way that we can simultaneously decrease the costs of the neuro specialists while increasing contact time with survivors and improving standards of care? At neumind, we are convinced that we can, one that bridges the gap between hospitals and community, families, survivors, and clinicians using technological innovation. The key to this is using technology to reduce the complexity of implementing neurorehabilitative interventions in the community while increasing the connectivity between clinicians, families, and survivors. This is where neumind comes in.

Empowering Survivors: neumind’s Comprehensive Neurorehabilitative Tools

From its inception, the building of neumind was a collaborative process between families, survivors, and clinicians. By enabling survivors to connect the app with both their carers and clinicians, neumind is a comprehensive tool to support neurorehabilitation in both acute care and community settings, ensuring a more holistic approach that encompasses neurological, psychological, and social dimensions of recovery. Offering cognitive tools such as reminders, prompts, and nudges, which assist the user in remembering their goals, lists, or routines and state-of-the-art errorless learning and spaced retrieval paradigms to enhance memory, neumind is a comprehensive digital solution for survivors, clinicians, and families.

Connecting Circles: Family and Carer Integration in Neurorehabilitation

In the neumind app, we've created a feature where family members and carers can join the user's circle. This allows them to stay updated on their loved one's progress and assist in managing their account. We utilise information from the individual and connected family members, carers, or clinicians to construct a comprehensive understanding of the individual's situation and needs. This information is then used to recommend personalised content and strategies that align with the person's challenges and goals. Carers also receive supplementary information that aids them in reinforcing and encouraging the strategies their loved one is working on.

Empowering Healthcare Professionals in Neurorehabilitation Through neumind

Healthcare professionals often grapple with the challenge of ensuring the continuity of therapeutic interventions beyond contact hours and integrating them into their clients' daily lives. To address this, they can connect with their clients on the app, enabling them to deliver their own strategies, assist in managing prompts, and monitor their client's progress. With just a few clicks, a psychologist or occupational therapist can add a fatigue tracker or time management strategy for a client.

Research conducted by neumind has unequivocally demonstrated that users, without guidance, generally create simple reminders for daily activities such as appointments. However, when connected with clinicians, users also employed prompts to deliver and monitor compensatory strategies, therapy tasks, psychoeducation. Our findings indicate that individuals flourish when the practical and cognitive support provided by prompts is coupled with structured guidance, effective motivations, and clearly defined goals.

The Role of Support Workers in Comprehensive Neurorehabilitation

With their extensive contact hours, surpassing that of any other healthcare professional, this is precisely why support workers play a vital role in neurorehabilitation. Support workers, with their complex role straddling personal and medical responsibilities, hold a unique position in facilitating this within the community. Despite their crucial role, the significance of support workers in neurorehabilitation and healthcare more broadly is often overlooked.

A Survivor’s Perspective: Overcoming Challenges in Neurorehabilitation with Support Workers

One of the reasons behind neumind’s founding lay in the difficulties of survivor and co-founder Luke Parry in finding the right support worker:

In the first two years after my injury I had ten support workers. Consistency and building a relationship with my support workers was an important part of my recovery. We were inundated with applicants but it was very difficult to tell whether they were a good match for me. When we did consider somebody, a lot of the time they were proposed after a short meeting or by a person or organisation who did not know me or my interests or hobbies.
Age was a significant determining factor in my experience. While I established strong connections with older support workers, I discovered that those closer to my age enabled me to better connect with individuals in my peer group and engage in activities that played a pivotal role in my progress, such as climbing. They became a part of my world, being not just my support worker but my friend.
Dealing with memory problems, I found myself struggling to recall information repeatedly, as if I were back in reception, being treated like a toddler and answering the same questions over and over again. I’m not being critical and realise that the nature of being a support worker means that it is often a temporary job for people. But although they are moving on, you are not moving. I built relationships with people only to have them leave. I found this difficult at the time but also it helped me come to terms with loss. This is what all survivors have in common.
One significant impediment I encountered during my rehabilitation was the lack of connection between support workers. Despite having a diary, it was rarely shared among them, and communication relied on a third party. This inconsistency had a detrimental impact on my rehabilitation, which was structured around long-term goals. These experiences inspired the creation of neumind, as the constant changes in personnel made it challenging to establish connections and keep track of important information.
The best support workers became friends; they knew me, my family, shared my interests and hobbies. They helped me during the hard part of my journey to recovery. Without them, I would have become trapped in myself and lost in self-regret.

Support Workers as the Linchpin in Comprehensive Neurorehabilitation

A support worker's intimate involvement in the daily lives of survivors allows them to implement and reinforce the goals of neurorehabilitation designed by the multidisciplinary team in a consistent and personalised manner. They are the ones who can adapt the strategies and interventions to the unique needs and circumstances of each individual, ensuring that the care provided is not only medically sound but also emotionally supportive and conducive to the individual's lifestyle. Their continuous presence and support help to bridge the gap between the clinical and community settings, making them an indispensable part of the neurorehabilitation process. In essence, support workers are the linchpin that holds together the various elements of neurorehabilitation, turning plans into action and goals into reality.

neumind: Pioneering Progress Through Connectivity and Support

The progress of neurorehabilitation has been hindered by structural constraints during the transition from acute to community care. The neumind app stands out for its ability to bridge the gap, offering survivors long-term support and, most importantly, facilitating connections among clinicians, families, and survivors. Technological innovation has played a crucial role in this progress, but it would be impossible without the invaluable contribution of support workers and carers working alongside survivors.

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